Category Archives: Access to Information

When I lay on my hospital bed (many times) or in my chemo chair (many times), with tears in my eyes over the pain and despair I had, I would have to confront the urge to quit. I was chemo exhausted and physically spent, at times, not wanting to go back to chemo or deal with anymore cancer news. Although there were moments of doubt and times when I wanted to give up, I never did.

I’m ominously reminded of those hospital and chemo days. I’ve been sitting watching the news crying and exhausted with all the health-care debates and seeming disregard for humanity as votes are cast and decisions seem to be made without regard to the true human toll or catastrophic consequences. As I wrote in my letter to Representative Steve Scalise (Majority Whip) and Representative Paul Ryan (Speaker of the House), “I hope you will consider citizens like me, a triple negative breast cancer survivor, when you cast your vote on any changes to health-care legislation. My eight years of survival, once considered a blessing, now possibly a curse as preexisting conditions are at the center of the proposed health-care bill. I’m concerned that the proposed health-care law changes will be deleterious.” And I’ll be honest, I’ve cried a lot over the past 24 hours. I empathize with those on the news who speak about how their life, truly, depends on affordable care. But, just as I’ve done in the past – weary, worn and wearing my cancer battle scars – I’m emboldened because this fight is not over. One thing you may not know about people with preexisting conditions (you’ll learn quickly) is that we are fighters. We’ve had to fight to survive and we know a lot about fighting!!!

It’s interesting that so many medical organizations responsible for the care and treatment of Americans opposed the American Health Care Act. But so many of you thought it was a good idea anyway. Oh, and by the way, I saw so much news about the American Health Care Act vote, but didn’t see the news on whether Congress voted to retain preexisting coverage for themselves and their staff. Hopefully, this was just overshadowed by the other “celebrations” of the day.

Well, my tears are dry. I am a preexisting condition and for every legislator who chooses to callously vote on the “better” economics of this act, I’m now your preexisting condition. You can do things like you did today, let your voicemail get full and choose not to take calls because, as your voice message stated, “it’s one of those days”. I’ll remember all of my chemo and surgery days, all of the days wondering if I’d live to see my kids grow up and if I’d have insurance coverage to help me sustain my life to do so. Yes, I plan to have a lot of “those days” and I’m encouraged that I’ll be joined by millions of others.

Preexisting conditions – sickness – are those things that are always around; sometimes at the forefront, sometimes in the background, but ever present. Their presence can be annoying and irk the $*## out of you. They can zap your energy and take a potentially good day to a day from hell. Often, they can make life difficult at best; sometimes hellish. My triple negative breast cancer can be considered a preexisting condition. And, with this new legislation, there’s the possibility that I could be a person relegated to the high-risk pool of uncertainty.

I’ll be excited during your 2018 reelection bid to put you into a high-risk (election) pool. This was never partisan, it is personal. And I’m taking it very personally. I am your preexisting condition. Hello. I won’t go away. Preexisting condition. Survivor. No quit in me!!!

Melanie A. Nix – Triple negative breast cancer survivor. Resilience Coach, Reconstructionist™ and Health and Wellness Advocate who chronicles life after a breast cancer diagnosis. Living my manifesto, Soul of a Survivor, and always striving to color outside of the lines when defining my new normal.

I consider myself a cultural tourist, a pop culture star gazer. So many of us want to know what’s happening in the lives of celebrities. I’m certain that that’s what’s contributed to the rise in popularity of so many reality shows that chronicle the day to day lives of stars; why we sometimes don’t mind waiting in line at the grocery store to get another peek at the cover story detailing what’s new in the lives of singers, actors, TV personalities, and sports figures. I’m not so “devoted” anymore, but there was a time that with each new publication or each new episode, I’d be watching and waiting to see what’s next.

Today I got a chance to see some of my most admired superstars and did a different type of star gazing. I was at the briefing for the release of the American Association for Cancer Research (AACR)’s Cancer Progress Report 2016. I had the opportunity to hear from some superstars – researchers and doctors who are paving the way for more breakthroughs that can increase survival and quality of life. I got to hear from superstars, the survivors and their families who have faced grim prognoses, but with determination and their own research, took newly approved cancer fighting therapies and participated in clinical trials.

The leadership of the AACR provided an overview of some key focus areas:

It was an information rich day and, as happens whenever I’m in the presence of other cancer survivors, I was so inspired. I think researchers and survivors agreed that there is still much to be done. But, equally, we are encouraged by the progress in the cancer fight. In addition to my pop culture star gazing, I include these among the most admired celebrities. The children, women and men who brave cancer, their caregivers and the researchers and doctors who develop and administer the cancer fighting and lifesaving therapies. I’ve said that I hope to see an end to cancer in my lifetime. I’m always encouraged by progress. So for these celebrities, for the next breakthrough, I’ll be attentively watching and waiting.

Tonight I’ll watch Stand Up to Cancer The 2016 Show and it will certainly get me thinking about my reasons to stand up to cancer. In July, my daughter looked at the ground and asked me “how is that plant growing through the concrete?” We had seen a plant that was growing in seemingly the least optimal circumstance. When we got to my computer, I did a quick search and learned that the plants aren’t actually growing through the concrete, but that they are growing through cracks in the concrete because they can grow anywhere there is water. But, they appear as if they are growing through the concrete. Like plants that grow straight up, looking like they are standing, I’ll continue to use the nourishment that I’ve received to push through the challenges brought by cancer and I’ll stand up.

I’ve enjoyed having these types of conversations with my children; moments of curiosity and wonder. These are moments that I wasn’t sure I’d have since my daughter was barely talking when I was diagnosed with triple negative breast cancer on November 21, 2008. I was a 38 year old married mother of a four year old son and a 19 month old daughter. My first prayer was for God to please allow me to watch my children grow up. As a fifth generation breast cancer patient and a carrier of the BRCA1 gene mutation, I was extremely unsure of my future. It felt like concrete had been poured on me, stopping me right where I was.

Right where I was, mostly, was lying on my back. When I lay in the hospital after my bilateral mastectomy, feeling weak and sick, I was still very unsure of my future. When chemo brought me exhaustion unlike any I’d ever experienced, an easy walk down the street seemed a distant memory and everyday tasks that I had done without thought now required planning and preparation. Curled in my bed trying to manage the effects of nausea and barely able to muster enough strength to get up, I was unsure.

But, with each passing day, with the care of my wonderful medical team, the care, love and support of my husband, family and small group of friends, I made progress moving toward my positive prognosis. Days where I could barely get out of bed have been replaced with days where I run 5 miles. Prayers to watch my children grow up continue and are accompanied by prayers of thanksgiving that I elatedly walked my soon-to-be 12 year old son into sixth grade and my nine year old daughter into fourth grade for the first day of school this week.

Surviving isn’t easy. This has been a long and hard journey, but I’ve gone from lying on my back in a hospital bed too weak to do much of anything to getting out of bed each morning, putting both feet on the ground, standing up cancer free. I stand up because I can! I’m blessed and grateful. I wish my mother, my role model, a woman who taught me what it means to survive and to live beautifully, could see me.

I stand up for my mother. My beautiful, loving, supportive, phenomenal mother. My personal and professional role model. My friend. My mother was the woman who nurtured me and showed me what it means to live her favorite mantra “bloom where you are planted”. She didn’t write a someday bucket list; she lived life fully in the face of cancer. She put in and got the most out of every day. 25 years ago, my 49 year old mother died of metastatic breast cancer after a 12 year battle with multiple recurrences. She was a light and when she died, a part of my world went dark just like concrete had been poured over me.

The darkness was brightened by the birth of my children. I stand up for my son and my daughter. Without ever knowing my mother, they have so much of her in them. They have her mannerisms and, most of all, a big, loving heart and a beautiful spirit. I’m blessed with each day with them. I’ll stand up to make sure that in their lifetime the toll, death rate and devastation from cancer is reduced, eliminated.

Without ever knowing my mother, my children had a surrogate maternal grandmother in my Auntie Zora, my mother’s baby sister. I’ll stand up for her. A strict disciplinarian during my youth, she provided a laid back and care free, nurturing environment for my babies. Grand Nanny Z, as they called her, was truly grand and we all suffered when she died of metastatic ovarian cancer in 2013 after a 30+ year cancer battle and multiple recurrences of breast cancer and ovarian cancer. She and my mother were some of the most respected cancer advocates and stood up for many. They especially worked to reduce breast cancer disparities in African American women.

This has been the fight of my life. My road from cancer has been painful and the losses provide the most excruciating pain that is with me every day. But, the light that my mother provided, the roots that she planted in me by showing me how to live her favorite mantra “bloom where you are planted”, the advocacy that my mother and my aunt showed me drives me to keep advocating for myself and others. I stand up for me. I stand up for my children who bring so much light to my life. I stand up for my late mother and my late aunt. I stand up for those who are too weak, too incapacitated by cancer to stand up right now.

And, I know that I’m not alone. My husband, Ray, who loved me back to life, is standing up with me. My sister, Monica, my caregiver, first and closest friend, is standing up with me. My sister-friends who are part of my family and helped push me through treatment and dark days are standing up with me. I’ve got my friends at the American Association for Cancer Research (the scientific partner to Stand Up To Cancer); my friends at the National Cancer Institute; my friends at Young Survival Coalition; my friends at Black Women’s Health Imperative; my friends at Facing Our Risk of Cancer Empowered; my friends at Capital Breast Care Center; and my friends at the Thelma D. Jones Breast Cancer Fund; all of whom I’ve worked with to eradicate cancer. These organizations have so many researchers and advocates who are fueled by moments of curiosity about the hows and whys of cancer that yield moments of wonder with each new breakthrough. With Vice President Joe Biden’s Cancer Moonshot Initiative “with the goal of making a decade’s worth of progress in cancer prevention, diagnosis, and treatment in just 5 years”, we’re continuing to make progress.

I’ll watch tonight as I do every time the program airs. I’ll remember the year that my aunt attended the live broadcast. I’ll laugh at some of the comedic sketches and I’ll cry at some of the vignettes, many that will stir emotions about my battle and those of my mother and my aunt. But when the credits roll, I know I’ll be further energized and I’ll continue to stand up. I’ll be fueled by the days when I spent most of the day lying on my back. Like the plant that appears to grow through concrete, I’ll keep pushing through every obstacle, finding a crack, a place where there is water and light to sprout up. I’ll continue to fight through imperfect conditions that cancer places before me and I’ll continue stand up to cancer.

On Wednesday, I spent the morning and afternoon at the National Cancer Institute (NCI) offering a survivor’s insights on the National Cancer Institute’s study of African American women and breast cancer. This is the largest ever national study on “how genetic and biological factors contribute to breast cancer risk among black women.” Along with Dr. Damali Martin of the National Cancer Institute, I conducted radio and television interviews sharing this information nationally, especially among African American women. That evening, my nine year old daughter, Kennedy, and I went to an outdoor jazz concert. When I was battling cancer, I wished for motherhood moments like this.

My health and my family are a priority! When I was diagnosed with triple negative breast cancer in 2008, my first prayer was for God to let me see my children grow up. I was especially concerned because triple negative breast cancer disproportionately affects African American women, young women and there is currently no targeted treatment. I was increasingly concerned because of my family history; I’m fifth generation in my family to have breast cancer and many of my relatives succumbed to breast cancer in their 30s and 40s. African American women, while diagnosed at a lower rate, have a higher rate of breast cancer mortality. All of these factors fueled my concern when I was diagnosed at 38. My daughter was 19 months old and my son was four years old. I am blessed that I have been able to watch them during the last seven years and it was nice to end the day with my daughter after being encouraged by the release of NCI’s study.

One of my insights through my cancer experience is the importance of access to information. I believe that learning as much as I can about this disease and my specific subtype has helped me advocate for myself to ensure that I’m getting the best care. Seven years later, as my daughter and I listened to the soothing music, the concert ended with a Louis Armstrong tribute and the band played “What a Wonderful World”. We sat smiling (see picture above) and I thought to myself, it’s indeed wonderful to be able to enjoy this time with my daughter. As the NCI study on African American women and breast cancer begins, I am hopeful that the findings will ensure ground breaking information that leads to more ways to reduce disparities and ultimately eradicate cancer. I pray for increased survival and quality of life. I hope that my daughter and I have many more years of jazz concerts together. And, I hope that the outcomes of this study will provide many more days like this for me and Kennedy and for African American women who face breast cancer.